B e f o r e :
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NHS STAFFORDSHIRE AND STOKE-ON-TRENT INTEGRATED CARE BOARD |
Applicant |
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- and - |
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(1) AB (by his litigation friend, the Official Solicitor) (2) MIDLANDS PARTNERSHIP UNIVERSITY NHS FOUNDATION TRUST (3) CD (4) EF |
Respondents |
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Re AB (ADRT: Validity and Applicability) |
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Benjamin Harrison (instructed by Capsticks LLP) for the Second Respondent
Catherine Dobson (instructed by Advocate) for the Third Respondent
Parishil Patel KC and Eliza Sharron (instructed by Irwin Mitchell LLP) for the Fourth Respondent
Hearing dates: 22 and 23 May 2025
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Crown Copyright ©
Mr Justice Poole:
Introduction
1.1. An individual who has made an ADRT does not provide it to a healthcare professional or make clear arrangements for it to be brought to the attention of clinicians in the event that they lose capacity to make decisions about their own medical treatment.
1.2. The authenticity, validity and applicability of an apparent ADRT are the subject of dispute amongst the individual's loved ones and family.
1.3. An ADRT which is the subject of dispute or doubt is not brought promptly to the attention of lawyers, Mental Capacity Act specialists, or the Court of Protection.
"(1) If P has made an advance decision which is—
(a) valid, and
(b) applicable to a treatment,
the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued."
The question that arises before the Court and for AB's treating clinicians is whether the treatment he is receiving, including CANH, should be continued. If AB's ADRT is valid and applicable to his current life-sustaining treatment, then it has effect as if he were now making a capacitous decision to refuse such treatment. In truth, for reasons set out below, that question ought to have been considered by AB's treating clinicians from the end of August 2024 and has remained a constant and unresolved question since then.
9.1. Is the ADRT a genuine document made of AB's own free will?
9.2. Is the ADRT valid?
9.3. Is the ADRT applicable to AB's current or future treatment?
11.1. Shortly before midnight on 4 May 2024 an ambulance was called to AB's home. AB had a polyp on his vocal cord and had acute shortness of breath. He was taken to hospital where he deteriorated and in the early hours of 5 May 2024 he effectively collapsed. He required an emergency tracheostomy but nevertheless suffered some five to six minutes of pulseless electrical activity - a cardiac arrest. He was moved to the critical care unit and intubated.
11.2. AB was treated at the hospital until 11 June 2024 when he was transferred to an acute rehabilitation ward. A Percutaneous Endoscopic Gastrostomy ("PEG") was inserted on 21 June 2024.
11.3. On 23 July 2024 AB was transferred to an acute rehabilitation trauma unit at another hospital (for which the Second Respondent NHS Trust ("the Trust") is responsible).
11.4. According to a witness statement from GH, who is from Corporate Services at the Trust:
"On the 22 August 2024 AB's partner CD provided the Trust with AB's last will and testament that was dated April 2024. On the 28 August 2024, the Trust then received a different document titled 'living will' that was said to have been written by in April 2024. A letter to a Judge that AB was said to have written in April 2024 was also provided at this time by CD. CD had stated that she had not known about the living will until this time and AB had written it without her knowledge."
11.5. On 18 September 2024 the Trust convened a best interests meeting at which some family members shared concerns about AB's vulnerability and relationship with CD and raised doubts about the authenticity of the Living Will.
11.6. In late September/early October 2024 it was recorded in AB's medical records that he had emerged from his PDOC.
11.7. On 13 November 2024 CD issued proceedings in the Court of Protection seeking to rely on the Living Will to restrict access for family members to AB and applying for her appointment as AB's Deputy. CD was acting as a litigant in person. The application was listed before the President of the Family Division on 20 November 2024. On the face of the President's order he noted "some level of uncertainty as to the reliability of the "living will"". He invited the Official Solicitor to act as Litigation Friend for AB and directed that members of the family be notified of the application. The application was listed for a further hearing before me on 15 January 2025 by which time the Official Solicitor was acting on behalf of AB.
11.8. My order of 15 January 2025 records that "no party has advanced grounds today that AB's continued medical treatment by the Trust ought to cease because of the Living Will document." I recorded that the Trust considered that the document ought not to have legal effect and the Official Solicitor was anxious that the status of the document ought to be resolved. All parties agreed that AB ought to be discharged to a suitable rehabilitative placement as soon as was practicable.
11.9. The Court received a witness statement dated 13 February 2025 from GH on behalf of the Trust in which, relying on information from AB's treating clinicians, she said:
"… the quality of life that [AB] can achieve cannot be predicted until the progress plateaus which may take 2-3 years. Withdrawing AB's life sustaining treatment such as his PEG again would not be consistent with his living will as he has emerged from PDOC and is due to move to a rehabilitation unit whereby he will have the opportunity to further progress. Any progress made will likely be a factor that positively impacts AB's quality of life."
GH also made it clear that the Trust did not believe that the Living Will (or the ARDT within it) was valid under the MCA 2005.
11.10. On 29 March 2025, the application came before me again. All agreed that the legal status of the Living Will required determination, firstly as to its validity and applicability and, if necessary, secondly as to its authenticity and whether it had been made under undue influence. I gave directions for a hearing of the issues of validity and applicability on 22 and 23 May and a pre-hearing review on 12 May 2025.
11.11. With the Court's approval that it was in his best interests, on 2 April 2025 AB was discharged from the Trust's care and transferred to a rehabilitative placement which I shall refer to as placement J. The ICB responsible for the funding of AB's care and treatment at placement J replaced CD as Applicant in the proceedings.
11.12. At the pre-hearing review on 12 May 2025 directions were given for Professor Wade to be jointly instructed to provide a report on AB's condition and prognosis.
11.13. Professor Wade's report asserts that AB is in a PDOC, has been since 5 May 2024, that the suggestion that he had emerged from his PDOC did not accord with the evidence within the medical and other healthcare records, and that AB is unlikely ever to emerge from the PDOC and certainly not to recover so that he does not require full time care. All parties except EF accept Professor Wade's opinion evidence on the issue of AB's current prognosis. The Trust now accepts that the ARDT is valid and applicable.
Professor Wade's Evidence
"His brain imaging studies showed no significant change initially, but a CT brain scan in December 2024 showed evidence of substantial cerebral atrophy. He became able to breathe without a tracheostomy. From an early stage, he has had purposeless large-scale motor movements affecting all four limbs, his face and trunk."
"a) he never emerged from his prolonged disorder of consciousness, and he remains at the lower level of consciousness.
b) He has marked motor restlessness with large-scale movements of all four limbs and his trunk which are purposeless but occasionally cause him to fall out of bed and can make care difficult.
c) He shows behaviours typical of people in pain or having emotional distress, and less frequently shows behaviours indicative of pleasure.
d) He has reached the maximum level he is likely to achieve, and there will be no significant sustained improvement. His actuarial life expectancy is nine years.
e) A decline in his responsiveness is likely at some point."
"5.20 Patients should demonstrate a consistent response on at least one of the following types and should do so whenever awake (eyes open) and presented with the situation:
- Functional use of objects
intelligent use of at least two different objects on two consecutive evaluations, with or without instruction. For example, writes or draws using a pen or pencil and uses a comb or a hairbrush to brush hair.
- Consistent discriminatory choice making
consistently indicates the correct choice from two pictures on 6/6 trials on two consecutive occasions, using at least three different picture pairs.
5.21 They should also show functional interactive communication giving:
- evidence of awareness of self
gives correct yes/no responses to 6/6 autobiographical questions on two consecutive evaluations
- evidence of awareness of their environment
gives correct yes/no responses to 6/6 basic situational questions on two consecutive evaluations.
5.22 It is recognised that some people with specific impairment of language may show evidence of awareness of themselves and their environment through behaviour and other non-verbal communication.
5.23 The key features are that the behaviour must be consistent and consecutive whenever the eyes are open (i.e. when the person is aroused and awake)."
"AB sustained his hypoxic brain damage 12 months ago. Recovery of brain function occurs for approximately three months after hypoxic brain damage, with most of that recovery occurring in the first few weeks. In a few people, there may be a minor improvement over the next three months, but further recovery does not occur."
Dr K's Evidence
" I have managed to contact [Dr X] our consultant clinical psychologist who stated;
I'm not sure that anything was recorded 'formally' as he hasn't properly ticked the RCP boxes. I think we agreed that his use of equipment when mobilising counted as "functional object use" although he hasn't done anything else consistently to my knowledge, and doesn't show any attempts at communication.
I hope that makes sense and apologies If I've caused any confusion earlier."
The Trust's Position
"I attach to this statement EXHIBIT 1 which contains the Trust's current guidance on MCA Advance Decisions and Advance Statements.
Historically, under paragraph 7.1 of our guidance, the position has been that:
'It is ultimately the responsibility of the healthcare professional in charge of the service user's care to decide where an advance decision is valid and applicable in the circumstances. In the event of a disagreement between healthcare professionals, or healthcare professionals and partners, family members or carers, the issue will be referred to the Trust Medical Director who will consider all available evidence and consult relevant colleagues and others to confirm its applicability.'
In light of the issues raised in these proceedings, the Trust has reflected and the guidance mentioned above will be amended to read as follows:
'If a member of staff has been presented with an existing living will (Advance Decision) that has not already been documented on the electronic system it should be treated as valid unless the member of staff has a doubt as to its validity. If the member of staff has doubt as to its validity and/or applicability, or if there is a disagreement between healthcare professionals, family members and carers as to its validity or applicability, the Advance Decision must be presented to the Trust Head of Mental Health Act and Mental Capacity Act to analyse and refer to the Trust solicitor for further advice if required. An urgent application may also need to be made by the Trust to the Court of Protection to determine the validity and applicability of the Advance Decision in question. Under no circumstance should the member of staff presented with the Advance Decision make a decision to determine its validity and applicability in the event they have a doubt.'
Further to this, in the interests of ensuring that our updated policy is implemented, I wish to assure the court that the Trust is in the process of arranging a training and refresher session to ensure all staff members comply with our policy on Advance Decisions. This will ensure all members of the team are well versed with our policy and prepared for any future situations of a similar nature to this matter."
The Living Will
27.1. A "Last Will and Testament" ostensibly signed by AB on 3 April 2024 and witnessed by LM and NP who signed it on the same date, in which AB revokes all former Wills and dispositions and makes CD his sole beneficiary;
27.2. A "Living Will" also ostensibly signed by AB and witnessed on 3 April 2024; and
27.3. A "Presiding Judge Letter" a densely typed, eleven page document explaining AB's decisions as set out in the other two documents. It is a deeply personal account of his family and his fiancée in which there is a stark contrast between the damning description of the former and the glowing description of the latter. This document is signed but not witnessed. There is no date by the signature but there is a typed date at the top of the document which is 27 April 2024.
"3. Reasons
3.1 I'm making this living will because: I do not want my life artificially prolonged. I want to stay in control of my life. I want to make my own decisions. I have witnessed loved ones having a bad death. I'm getting older I want to be prepared. I think I might have throat cancer. I want to make choices while I have capacity. I want to make things easier for [CD]
4. Statement of Circumstances
4.1 have witnessed firsthand the impact on those living with dementia and the impact on family. My Nana had dementia before she died, but she died before her death it was just her body surviving. She was a shell of the person she once was, if I ever diagnosed with dementia I would not want any lifesaving intervention such as lifesaving surgeries, lifesaving antibiotics CPR or other lifesaving protocols during any time that I have dementia.
4.2 … if I ever have … sepsis I would want lifesaving treatment. I would not want loss of multiple limbs if this is what was needed due to the sepsis to survive, I would not mind loss of one limb but not multiple limbs, if I needed multiple amputation I would choose to refuse lifesaving and life sustaining treatment.
4.3 I have been explained the impact of brain injuries from suicide, my [relative] hung himself and did not survive, me and my partner were explained the impact of the damage to the brain from hanging, this included the life he would have had and not had if he had survived. From vegetable state to life with permanent life changing disabilities with no quality of life at best. After learning about this I would choose to not have any lifesaving treatment if I were to have a bad brain injury that caused life changing permanent disabilities and no quality of life. I would choose to refuse any life sustaining treatment, I do not want to prolong my life and do not wish for my life to be sustained by medical life sustaining treatment. It is of my personal opinion that it is no life for a dog to live on life sustaining treatment, I wouldn't put my dog through that, I certainly do not want that for myself.
4.4 I have personally witnessed the devastating effect of dementia, brain damage and life changing disabilities. In a professional capacity I have trained people who have brain damage on different levels and disabilities on different levels, I have nothing against people with dementia, limb loss, brain damage or disabilities, I treat everyone the same with respect but it is not a life I choose for myself, I'm an active person who likes to be in control of my life and I do not want to live with dementia, limb loss, serious brain damage where it causing me to live with permanent life changing disabilities or life altering disabilities.
5. Life sustaining or lifesaving treatment I refuse
5.1 I refuse any medical treatment, including anything intended to prolong or sustain my life in the event that I have dementia, multiple amputation from sepsis or a bad brain injury causing life-long life changing disabilities. The treatment I refuse includes:
• cardiopulmonary resuscitation (CPR)
• mechanical ventilation, both invasive and non-invasive
• clinically assisted nutrition and hydration
• antibiotics for life-threatening infections and serious infections
5.2 I'm a very active person and have always been an active person, I would not choose to have tubes or machines keeping me alive, I strictly would not choose to have my life prolonged with dementia, limb loss or bad brain damage causing permanent disabilities. This would not be life to be it would be suffering, I want a dignified death.
6. Quality of life definition
6.1 The impact of health on my ability to live a fulfilling life. Physical, psychological with social functioning and well-being.
6.2 If I were to get dementia, multiple limb loss or a bad serious brain injury I do not want to live in a care home, nursing home and do not want to live a life with 24 hour care where I cannot do basic living for myself example going to the toilet, having a shower, cleaning myself, getting dressed. I want to have the dignity in death that I have in my life, all my life.
6.3 I do not want to live a life on artificial food, hydration or on medication to keep me alive for the rest of my life."
8. My Decisions
8.1 I confirm that I refuse medical treatment to prolong my life by keep me alive by artificial means in the event of:
a. I'm medically diagnosed with and suffering from Dementia or Alzheimer's I do not want to live with this
b. I suffer from severe permanent disability mentally or physically which I'm unlikely to recover to have a quality of life without full time care
c. I suffer from bad brain damage which I'm unlikely to recover to have a quality of life without full time care
d. I have multiple limb amputations which I'm unlikely to recover to have a quality of life without full time care
e. I am unlikely to regain the ability to make these decisions for myself
I have told people my wishes above which they will attest to, if I need to refuse medical intervention, I would only want medical treatment to free me from pain. I wish to be given pain relief to alleviate pain and distress aimed at ensuring my comfort. I'm not an organ donor and do not wish to be. I want a dignified death, my grandad was a strong, dignified man who had a dignified death. I want a dignified death, I want to protect my wishes."
The Law on Advance Decisions to Refuse Treatment
"24 Advance decisions to refuse treatment: general
(1) "Advance decision" means a decision made by a person ("P"), after he has reached 18 and when he has capacity to do so, that if—
(a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and
(b) at that time he lacks capacity to consent to the carrying out or continuation of the treatment,
the specified treatment is not to be carried out or continued.
(2) For the purposes of subsection (1)(a), a decision may be regarded as specifying a treatment or circumstances even though expressed in layman's terms.
(3) P may withdraw or alter an advance decision at any time when he has capacity to do so.
(4) A withdrawal (including a partial withdrawal) need not be in writing.
(5) An alteration of an advance decision need not be in writing (unless section 25(5) applies in relation to the decision resulting from the alteration)."
"25 Validity and applicability of advance decisions
(1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P unless the decision is at the material time—
(a) valid, and
(b) applicable to the treatment.
(2) An advance decision is not valid if P—
(a) has withdrawn the decision at a time when he had capacity to do so,
(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or
(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.
(3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it.
(4) An advance decision is not applicable to the treatment in question if—
(a) that treatment is not the treatment specified in the advance decision,
(b) any circumstances specified in the advance decision are absent, or
(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.
(5) An advance decision is not applicable to life-sustaining treatment unless—
(a) the decision is verified by a statement by P to the effect that it is to apply to that treatment even if life is at risk, and
(b) the decision and statement comply with subsection (6).
(6) A decision or statement complies with this subsection only if—
(a) it is in writing,
(b) it is signed by P or by another person in P's presence and by P's direction,
(c) the signature is made or acknowledged by P in the presence of a witness, and
(d) the witness signs it, or acknowledges his signature, in P's presence.
(7) The existence of any lasting power of attorney other than one of a description mentioned in subsection (2)(b) does not prevent the advance decision from being regarded as valid and applicable."
"26. Effect of advance decisions
(1) If P has made an advance decision which is—
(a) valid, and
(b) applicable to a treatment,
the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.
(2) A person does not incur liability for carrying out or continuing the treatment unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment.
(3) A person does not incur liability for the consequences of withholding or withdrawing a treatment from P if, at the time, he reasonably believes that an advance decision exists which is valid and applicable to the treatment.
(4) The court may make a declaration as to whether an advance decision—
(a) exists;
(b) is valid;
(c) is applicable to a treatment.
(5) Nothing in an apparent advance decision stops a person—
(a) providing life-sustaining treatment, or
(b) doing any act he reasonably believes to be necessary to prevent a serious deterioration in P's condition,
while a decision as respects any relevant issue is sought from the court."
The Parties' Positions
Interpretation of the Advance Decision to Refuse Treatment
"I would choose to not have any lifesaving treatment if I were to have a bad brain injury that caused life changing permanent disabilities and no quality of life."
At paragraph 8.1(c) he wrote:
"I confirm that I refuse medical treatment to prolong my life by keep me alive by artificial means in the event of:
…
c. I suffer from bad brain damage which I'm unlikely to recover to have a quality of life without full time care."
Professor Wade commented on the expression "no quality of life", questioning what that meant. One might also point to the difference between "lifesaving treatment" and "treatment to prolong my life". It might be said that AB was choosing not to consent to treatment to save his life following a severe brain injury and only if he was going to be left with "no quality of life". However, no party urged me to interpret the document that way and I readily accept that, taking the document as a whole, AB was refusing his consent to certain treatments following a "bad brain injury" in circumstances when he was unlikely to recover to a point where he would not require full time care. Clinicians and the court do not have to question whether he has "no quality of life" only whether he is unlikely to recover so that he will not need full time care.
"50. Under s.26 of the MCA 2005, an advance decision only has effect when the person who made it has subsequently lost capacity to make the material decision. The advance decision can be withdrawn (s.25(2)(a)) or displaced by an LPA (s.25(2)(b)) but withdrawal can be effected and an LPA can be granted only when the person concerned has capacity to do so. No such restriction applies to s.25(2)(c). I interpret s.25(2)(c) as allowing for the advance decision to be rendered not valid should the person who made the advance decision do "anything else" (other than withdrawal or granting an LPA which displaces the advance decision) which is "clearly inconsistent" with the advance decision remaining their fixed decision, before or after they have lost capacity to make the relevant treatment in question. The question will only arise after they have lost capacity but the court may consider things done before or after that time. Munby J refers to a person being locked into their advance decision once they have lost both capacity to decide whether or not to accept medical treatment and any ability to express their wishes and feelings. Similarly, s.25(2)(c) allows for a person who has lost capacity nevertheless to do something or to have done something which renders the advance decision not valid.
51. I also note that s.25(2)(c) will only fall to be considered in the case of a person who has not withdrawn (revoked) their advance decision, and who has not subsequently granted an LPA conferring authority to give or refuse consent to treatment to which the advance decision relates. Something other than express withdrawal of the advance decision may suffice to render it not valid. It follows that, as Munby J emphasised in HE v A Hospital NHS Trust (above), the term within Mrs W's advance decision that "It will remain in force unless and until specifically revoked in writing by me" is unenforceable.
52. Three words within s. 25(2)(c) require particular comment:
a. "done": I read this to include words as well as actions. I am strongly reinforced in this view by what Munby said at paragraph [43] of his judgment in HE v A Hospital NHS Trust (above):
"No doubt there is a practical - what lawyers would call an evidential - burden on those who assert that an undisputed advance directive is for some reason no longer operative, a burden requiring them to point to something indicating that this is or may be so. It may be words said to have been written or spoken by the patient. It may be the patient's actions - for sometimes actions speak louder than words. It may be some change in circumstances. Thus it may be alleged that the patient no longer professes the faith which underlay the advance directive."
The statutory provision does not refer to words and actions, only what P has "done", but it would be an odd restriction on the interpretation of "done" to exclude written or spoken words when the provision is addressed to previous written or spoken words in the form of an advance decision (an advance decision about treatment which is not life-sustaining treatment may be made verbally).
b. "clearly": the court should not strain to find something done which is inconsistent with the advance decision remaining the individual's fixed decision. Something done or said which could arguably be "inconsistent", or which the court could only find might be inconsistent will not suffice.
c. "fixed": s.25(2)(c) does not merely require something done which is inconsistent with the advance decision, but rather something done which is inconsistent with it remaining the person's fixed decision. Fluctuating adherence to the advance decision may well be inconsistent with it remaining their fixed decision. As with the other elements of the test, whether it is inconsistent will depend on the facts of each case."
Conclusions
51.1. There is evidence from the family that the style of language used in the ADRT and the letter to the Presiding Judge is not at all typical of AB.
51.2. The family has provided evidence that there are plain errors in the documents which suggest that they were not made by AB, for example in the pet-name he gave his grandmother.
51.3. The family has given evidence that some of the assertions made in the documents are at odds with AB's communications with them at the time.
51.4. The documents were produced so late after AB's brain injury. It is a legitimate question to ask why those who knew he had made the ADRT would not produce it if it had indeed been made before he lost capacity.
51.5. The document was produced after a significant falling out between CD and the family and was relied upon by CD to seek to exclude the family from involvement in AB's life and decision-making about his treatment.
53.1. The MCA 2005 Code of Practice, paragraph 9.38 states:
"It is the responsibility of the person making the advance decision to make sure their decision will be drawn to the attention of healthcare professionals when it is needed. Some people will want their decision to be recorded on their healthcare records. Those who do not will need to find other ways of alerting people that they have made an advance decision and where somebody will find any written document and supporting evidence. Some people carry a card or wear a bracelet. It is also useful to share this information with family and friends, who may alert healthcare professionals to the existence of an advance decision. But it is not compulsory. Providing their GP with a copy of the written document will allow them to record the decision in the person's healthcare records."
An ADRT will not be effective if the relevant people do not know it exists. In the present case the ADRT had not been placed in AB's medical records or provided to his GP before he sustained his brain injury. AB relied on friends to alert healthcare professionals of the ADRT but they did not do so for nearly four months after his brain damage was sustained. Any individual wanting to make an ADRT would be well-advised both to (i) provide a copy to their GP, and (ii) give clear instructions to anyone else to whom they provide a copy to bring it to the immediate attention of healthcare professionals in the event that the individual is unable to make decisions for themselves about their medical treatment.
53.2. Disputes about the authenticity of an ADRT may be rare but provision of the document to the individual's GP would avoid any later allegations that the document was made at a later date than appears on its face.
53.3. A signed, written ADRT that is valid and applicable to the clinical situation is legally binding on clinicians. There is no need for a best interests discussion because the patient has made their decision and it is to be treated as if it is their decision at the time when a question of treatment arises. The wishes of the family cannot override a valid and applicable ADRT nor can clinicians' views of the wisdom of the ADRT.
53.4. The RCP PDOC Gudelines 2020 state:
"Where there is genuine doubt about the capacity of the patient at the time to make the ADRT or about its validity or applicability, legal advice should be sought and, if necessary, an application made to the Court of Protection." (paragraph 4.5.1)."
The Trust's previous internal guidance did not follow the RCP PDOC Guidelines 2020 in this respect. Furthermore, the Guidelines emphasise that clinical teams should request a copy of the ADRT and not rely upon a report of what it says. These documents require careful consideration as Hayden J said in NHS Cumbria CCG v Rushton (above):
"25. Mrs Rushton's circumstances do however provide an opportunity for this Court to emphasise the importance of compliance both with the statutory provisions and the Codes of Practice, when preparing an Advance Decision. Manifestly, these are documents of the utmost importance; the statute and the codes provide essential safeguards. They are intending to strike a balance between giving proper respect and recognition to the autonomy of a competent adult and identifying the risk that a person might find himself locked into an advance refusal which he or she might wish to resile from but can no longer do so. The balance is pivoted on the emphasis, in the case of life-sustaining treatment, given to compliance with the form specified by statute and codes. The Court has highlighted the profound consequences of non-compliance with the requirements: W v M and S and A NHS Primary Care Trust [2012] COPLR 222; Re D [2012] COPLR 493.
26. It perhaps requires to be said, though in my view it should be regarded as axiomatic, that the medical profession must give these advanced decisions the utmost care, attention and scrutiny. I am confident the profession does but I regret to say that I do not think sufficient care and scrutiny took place here. The lesson is an obvious one and needs no amplification. Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation."
AB's apparent ADRT demanded careful scrutiny as soon as it was brought to light. That ought to have involved some immediate enquiries to ascertain its validity and consideration of its applicability. Once doubts were raised about its authenticity there was a need for an application to the Court of Protection.
53.5. A prolonged disorder of consciousness is one in which the patient is unconscious for more than four weeks (RCP PDOC Guidelines 2020, paragraph 1.1). For a patient in a PDOC, in the absence of a known ADRT, those responsible for treating P will need to follow the best interests guidance within the RCP PDOC Guidelines 2020 and within caselaw such as NW London CCG v GU [2021] EWCOP 59. The emergence of a patient from PDOC is of considerable importance and should be recorded only when the criteria for emergence are met and recorded. The importance of a finding of emergence can hardly be understated. It is relevant to decision-making about treatment and best interests, as well as to communications with the family and long-term planning. In the present case it was also crucial to the applicability of the ADRT which the Trust had at the time when it recorded emergence. Accepting Professor Wade's opinion, it is regrettable that professional rigour was not applied at the time when it was wrongly noted that AB had emerged from his PDOC when under the care of the Trust. That error has contributed significantly to delay in identifying and then resolving the issues in this case.
53.6. MCA 2005 s25(2) sets out when an ADRT is not valid. A clinician is unlikely to know simply by looking at the document whether it has been subsequently withdrawn, whether it has been rendered invalid by the making of an LPA, or whether P has done anything else clearly inconsistent with the ADRT remaining their fixed decision. The Trust's new internal guidance enjoins a clinician presented with an ADRT to assume that it is valid unless they have doubts about its validity. However, it would be wise for clinicians presented with an apparent ADRT pro-actively to make enquiries - with the family or friends of P if possible - to discover whether there is any evidence that might call into question the validity of the ADRT under MCA 2005 s25(2).
53.7. Unless the ADRT is clear, questions as to its applicability under MCA 2005 ss25(3) and (4) and, if the treatment under consideration is life sustaining treatment, s25(5), require careful consideration and may require legal advice to be sought, as the RCP PDOC Guidelines 2020 recommend. If there is unresolved doubt or an ongoing dispute about the validity, applicability and/or authenticity of an ADRT, then it is likely that an application to the Court of Protection will be required. The Trust accepts that it should have made such an application in this case. Instead, CD made the application but her primary concern at the time of the application was not the ADRT but the parts of the Living Will and Letter to Presiding Judge dealing with contact with members of AB's family. Hence the issues concerning the ADRT itself were not promptly brought to the Court's attention until January 2025. The Trust had the resources and experience to make a prompt application for a determination of the validity and applicability of the ADRT and it should have done so. The need to make a prompt application when the validity, admissibility or authenticity of an ADRT are in doubt or dispute is clear: administering a treatment to a person who has refused it through an authentic, valid and applicable ADRT is as unlawful as is providing treatment to a person with capacity who refuses consent to it. MCA 2005 s26(5) allows treatment to be given "while a decision as respects of any relevant issue [relating to an apparent advance decision] is sought from the court" but that is not a reason to delay seeking a decision from the court.
53.8. Even if the ADRT is not valid and/or is inapplicable, it may yet be taken into account in a best interests decision. Furthermore, clinicians and P's family may agree that P's best interests coincide with their expressed wishes, even if those wishes were contained in an invalid or inapplicable ADRT. Even if there are disputes about the provision of some treatments, such as CANH, there may be agreement about others, such as CPR. Hence, ongoing consideration of best interests should not be put on hold whilst the validity and applicability (and indeed, authenticity) of an ADRT is being scrutinised. These are processes that should be followed in parallel with each other.
53.9. Any person who questions the authenticity of an ADRT which is ostensibly valid and applicable, or who is concerned that it was made under undue influence, must provide some reasonable grounds for raising those issues. The Courts will not sanction significant delays in resolving disputes about an ADRT without good cause.